New Show on Gallaudet students, and, Part I of Deaf as Disability Series

I just discovered that MTV will be airing a new show focused on the lives of college kids at Gallaudet University, which, as you may or may not know, is the only college for the deaf and hard of hearing.  It's called "Quiet Campus" and will be aired on mtvU, which apparently is a MTV channel focused on college students (which confuses me - isn't regular MTV focused on college students?)  Anyway, here's the press release, and here's a blog post in the NY Times with some quotes from some of the students featured in Quiet Campus.

I think this will be cool to watch.  The premise of the show is apparently that deaf kids aren't that different from "typical" kids - they're wrestling with the same issues, have many of the same concerns.  I think it will attract viewers who want insight into a world that they're likely unfamiliar with.  And if Switched at Birth is any indication, the series could attract quite a number of viewers.

HOWEVER, my next set of thoughts about this show (Quiet Campus) is that inescapably, this is going to highlight differences between deaf kids and hearing kids.  Inevitably!  Deaf kids use ASL, and have alternate ways of using technology.  Alarms clocks in Gallaudet, I'll just bet, involve flashing lights and vibrations - not songs or musical sounds from your iPhone.  Being deaf is different, in the sense that being any kind of minority is different from the way the majority of people deal with the world.

This gets to something that I see as a big tension in the deaf/Deaf community.  One set of people who have no hearing ("Deaf") view being Deaf as being part of a separate cultural community, one with its own language (ASL), history, and current culture.  Another set of people who have no hearing ("deaf") do not wish to participate in a Deaf community - they learn to speak and read lips, they rely on cochlear implants, and they attempt to integrate into mainstream US culture as much as possible.  So, I suppose it's like any minority community - there are those who emphasize the differences from the majority culture, and are those who integrate.

And yet for the Deaf, there is another issue that doesn't face other minorities - there is something more to the difference between Deaf and hearing.  There is in fact, some kind of dis-ability; Deaf people cannot use the communication modality - hearing and speaking - that the majority uses.  And this is why we as a society have chosen to support the Deaf by (a) recognizing that Deaf people need technical accommodations, like TTY systems, and better access to the 911 system and (b) providing educational services, in the form of IDEA supports and publicly funded schools for the Deaf.

But a lot of Deaf people seem really uncomfortable with the idea that they are "disabled".  Their view is "hey, there's nothing wrong with me, I can do anything that typical people can, I don't need to be fixed".  I certainly sympathize with this view - I have trouble labeling my own daughter as "disabled".  However, in order for my daughter to receive special ed services, she must fall within one of the legally defined categories of disability - that's just how we as a society have organized these programs.  So, too, with deafness - it's one of the categories defined under the ADA, the IDEA, and all the other laws as a disability.

So, what do you think?  Is being Deaf a disability?  Is it not?  Is the issue actually one where we need to throw out the disability/ability categories entirely?  What should replace it?

I plan to keep talking about these issues, so check back soon!

Dyslexie, or, Technology Rocks!

This video has been around for a while, but it is so cool and such a great example, again, of how technology can help kids with special needs - in this case, specifically dyslexia.

If you go to this YouTube video, you will see a demonstration of a new typeface called "dyslexie", which was designed by a guy with dyslexia to be more readable and cause fewer errors for people with dyslexia.  (You can also go to the guy's website, but it's mostly in Dutch and I don't speak Dutch).

The idea is to have the font itself be a tool for reducing errors.  So, as the video explains, the English alphabet was not designed with dyslexia in mind!  There are only 26 letters, and many of them look alike - v and w, i and j, d and b and p and q.  The problem is ascerbated by sans serif fonts that are widely used (like Arial, and Helvetica, and ones that like.)  So, "dyslexie" emphasizes differences between letters, weights the letters on the bottom so that it's easier to see a "d" instead of a "p", angles some letters to make them look different, and emphasizes punctuation and the capital letters at sentence beginnings (so that it's easier to know when the sentence ends and a new sentence starts).

According to one study at the University of Twente, this actually works.  Now, it wouldn't hurt to have a few more studies verifying it, but hey, the essential points are still there: (1) make letters look more distinct from each other and; (2) make it easier to know when sentences begin and end.

I think it's so awesome when people use technology in creative ways to solve problems like this.  Practically speaking, I'm not sure how to get dyslexie across the pond and into books for kids (or onto computer screens).  But I appreciate now knowing that a couple of simple changes in the way words are presented could make life easier for a kid with dyslexia.

12 Years after Olmstead

Twelve years ago, the Supreme Court issued a decision in Olmstead v. L.C., a case about two women in Georgia who were institutionalized despite their preference for community-based living.  The Court held that the ADA prohibits the unjustified segregation of individuals with disabilities (meaning, public entities have an obligation to provide community-based living, not institutions, for individuals with disabilities wherever possible.) 

Just this past week, the Department of Justice - charged with enforcing the ADA - issued a statement re-enforcing its position on Olmstead's requirements that individuals with disabilities be integrated into community living as fully as possible.  You can read the report here, and I've summarized some of the key points below:

Weekly News Roundup - Frontier flight gone wrong

Hey folks,

Last week's news roundup was pretty weighty, with the Arc's disability supports report, and the WHO's report on international incidence of disability (still plowing through that one myself!).  Nothing quite as big this week, but just one story that reminds me of how much further we have to go in our collective respect for those with disabilities.

Frontier Flight Gone Wrong. This past Sunday, a young man named John Morris who is quadriplegic was not permitted to stay on a Frontier flight from Dallas to Denver because the pilot thought it "unsafe" to permit him to stay.  The excuse was that since he had limited upper body control, it would be unsafe for him to fly.  Nevermind that there was no problem with his flight from Denver to Dallas two days earlier - John had simply used the seat belt extension that the airline carries to secure his chest, and he was traveling with two companions who were quite familiar with his needs.

In the discussion that followed, several passengers overheard Frontier employees saying that company products couldn't be used as medical devices.  (Wha?)  And so these passengers volunteered their own belts or whatever they could to help John.  That was rejected.  Instead, the pilot called the local police!  No really!  The police talked to everyone, concluded it was not a police matter, and told the pilot.  Pilot still refused to take off with John on the plane.   Finally, John and his family left the plane and boarded a later flight.

Repercussions for the pilot?  Zero.  Repercussions for Frontier (so far)?  Zero.

This kind of intolerance is unacceptable.  If you agree, let Frontier know, and vote with your feet.  You can file a complaint here.

Welcome to Holland.

Today, I want to repost an essay I just found by Emily Perl Kingsley.  It seems to be quite well known in the disability community, but it was new to me and I want to share it more broadly.

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I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

c1987 by Emily Perl Kingsley. All rights reserved


Here's the original link

Weekly News Roundup - Arc Survey, WHO Report, and a TV show with a silly premise

Big news week, actually!  Let's dive right in.

ARC Report on Disability Supports:  The ARC is a great non-profit organization that focuses on improving and supporting the lives of people with intellectual or developmental disabilities (commonly shortened to I/DD).  This week, they released the results of a survey of 5000 individuals with I/DD and their family members about everything from employment and educational opportunities to family and local supports.  The full report is on the ARC website here.

The results were a little discouraging.  While progress has definitely been made - witness the closure of state mental institutions, for one thing - we are falling short in supporting individuals with I/DD.  Here are just some of the reported stats:

• 52% of families reported that their family member with I/DD left school without receiving a high school diploma, including 10% that never finished high school.
• Only 8% report having any college level experience
• 4 out of 10 parents report being dissatisfied with the quality of education their students with I/DD received in primary/middle (40%) or high school (38%).
• 85% of families reported that their adult family members with I/DD were not employed, either part-time or full-time.
• 58% of parents/caregivers report spending more than 40 hours per week providing support for their loved one with I/DD, including 40% spending more than 80 hours a week.
• 1 out of 5 families (20%) report that someone in the family had to quit their job to stay home and support the needs of their family member.
• More than 75% of families report they can’t find afterschool care, non-institutional community services, trained reliable home care providers, summer care, residential, respite and other services.
• 62% of families report that services are being cut in the community, limiting or eliminating access to community life and opportunities for their family member with I/DD.
• One-third (32%) of parents/caregivers report that they are on waiting lists for government funded services, with an average wait of more than five years. They are waiting for personal assistance, respite, housing, therapy, employment supports, transportation and more.

Given this situation, the ARC has issued a call for action to all of us.  We need to publicly support individuals with I/DD - support their inclusion in the community, education, and workplace opportunities.  We need to vote. 

World Health Organization Survey on Disabilities: For the first time since the 1970s, an NGO tried to determine the incidence of disabilities world-wide.  The WHO survey states that about 15% of the world population (about 1 in 7, or, 1 billion people) lives with some kind of disability.  Their disability categories included individuals with difficulties seeing, hearing, walking, remembering, taking care of themselves or communicating. Worldwide, the most common disability in people under the age of 60 is depression, followed by hearing and visual problems.

That's pretty similar to the 1 in 6 figure recently estimated by the CDC.  So while data collection and reporting may be imperfect (especially across international boundaries), at least it seems in the right ballpark.

In the forward to the report, Stephan Hawkings offered the thought that we, society, have a moral obligation to remove barriers to participation for individuals with disabilities.  After all, the chances are that all of us, at some point in our lives, will be disabled, temporarily or otherwise.  (Picture progressive vision or hearing loss; a temporary mobility problem; menopausal memory loss).  I'm not sure we're going to get very far towards social change, however, with a moral argument.

I'm hoping that there are economic or other arguments in the report.  Since it's 350 pages long, I haven't had a chance to fully digest it yet.  I'm sure I'll be posting more about it.

Switched at Birth: Ok, this TV show (on ABC Family) has the worst name, and the silliest premise of pretty much any show on TV right now.  You guessed it - it's about two families where the daughters were (drumroll) switched at birth!  Ugh.  However, it is oddly well done, and the reason I mention it here is that one of the daughters is deaf.  So she and her non-birth-mother-who-raised-her are fluent signers, she goes to a deaf school, and her best friend is deaf.  It's the first time I've ever seen people using sign on TV, and I think it's just great. 

You can download the first two episodes from iTunes for free, if you missed them.

And in personal news, I got my echo LiveScribe pen!  I am so excited to start making audio books for Siobhan.  I will let you know how it works out.

Weekly News Roundup - Stop the Word, Khan Academy

I'm starting up a new feature for Fridays - I'll be summarizing some of the more notable events of the past week in the education, disability, and legal arenas (basically, what I found interesting).  Purely subjective - don't rely on me as your news source!

Probably the item that got the most attention across the press was the CDC's release of the study showing an increase in the rates of developmental disabilities in kids.  I'm still processing it myself.  It is just a number - but, like any statistic, it will (hopefully) have an impact on funding, and public awareness.  And it might even have an impact on educational policy and theories of inclusion.  I also hope it encourages a little more public acceptance.

Speaking of acceptance, the other big news was the public service announcement at the end of Glee sponsored by the .  In case you missed it, check it out on YouTube.  It's pretty powerful, and rightly a reminder that discrimination against the cognitively impaired is probably the last "acceptable" discrimination against a minority (possibly also obesity).

Lastly, our friends at the Khan Academy are in the news again!  This article in Business Week is a wonderful summary of how the Khan Academy started, and how it's being used in the Los Altos, California, school district (incidentally one of the best in the country, already).  Impressive out of the box thinking - both at the school district and at the Khan Academy.  Thanks for the tip, Jen!

1 in 6

The U.S. Center for Disease Control and Prevention (CDC) has just released results from a study that examined rates of disability in children ages 3-17, over a 12 year period from 1997-2008.  (You can read the whole report online here, but you'll have to buy a subscription to Pediatrics: CDC Report in Pediatrics).  Here's the high level summary:

• Between 1997 and 2008, the number of children with a disability rose from 8.2 million to roughly 10 million, or from less than 13% to more than 15% of all kids between the ages of 3 and 17. 
• The disabilities included in these numbers include autism, ADHD, learning disabilities, cerebral palsy, seizures, stuttering or stammering, hearing loss, blindness, or intellectual disability (formerly known as mental retardation).
• Nearly twice as many boys as girls had a disability.

That's higher than you thought, right? We're talking about significant numbers of kids in our school systems who need help in accessing their education.  I can tell you, though, that budgets for special education services - or for general education, for that matter - have not increased to keep up with these trends.

Not again! ANOTHER update about words

Ok, so you'd think that maybe people in the public eye would have learned by now, given the slip-ups by President Obama, Rahm Emanuel, and Lady Gaga.  (See my earlier posts on this topic: A word about words and Lady Gaga Update  ). 

I suppose we are giving these folks too much credit, because yet again, someone thinks it's okay to use the r-word in a disparaging manner.  This time, a sports figure.

After Game 3 of the playoffs, LeBron James took offense at a reporter's question and muttered "that's retarded".  At the next press conference, he addressed the issue, saying it had been "blown out of proportion".  This is how he "apologized": "If I offended anyone, I sincerely apologize."  Well, yes you offended people; otherwise, you wouldn't have to apologize.  LeBron James and his apology.  So just actually apologize.  Maybe try to understand why your careless use of the word was indeed offensive.  Maybe reach out to disability organizations and use your bizarre amount of fame for a good cause.

Let's review:
1. It's not okay to use the r-word. 

1a. Really, don't use it when speaking to a reporter.  That's not a good idea.

2.  Spread the Word to end the Word.  You can "like" the facebook group, support the campaign through donations, or simply be a great role model in your own life.

Update: A Word about Words

Sigh.  Just when you think that something is so obvious NOT to do, someone does it anyway.

As you may or may not be aware, Lady Gaga made a major gaffe recently when she was interviewed by NME magazine (a British music magazine).  In response to a question about the similarities between "Born this Way" and Madonna's "Express Yourself" from the 80s, Lady Gaga said, " I'm a songwriter. I've written loads of music. Why would I try to put out a song and think I'm getting one over on everybody? That's retarded."

Sigh.

Apps for Kids: Do they really teach anything?

I've posted a fair amount about how schools can use technology like the iPad to provide services and curriculum support to kids.  Tablet computers will likely replace paper textbooks at some point - and it's really easy to see that coming for graduate schools (maybe even colleges). But, one commentator rightly asked "are these things really suitable for elementary school kids?"  Good question: after all, one of Siobhan's therapists is adamant that we *not* use the iPad as her AAC because of the potential for breakage.

We've seen how young kids - even as young as 3 years old - have an amazingly intuitive ability to use tablet computers to play games and watch videos.  But is there really any learning value?

A word about words

Perhaps I'm about to expose my liberal arts background.  Or perhaps I'll be saying the obvious, but this post is about the importance of labels, and how the words we use to describe people with disabilities matter.

I think we'd all agree that language evolves, and evolves in such a way that words we've used in the past just aren't acceptable in the present day.  I know that some people get annoyed about what they view as "PC" attitudes (and indeed, did you see P.C.U.?  It was released when I was in high school, and I remember thinking it was funny.  Features Jeremy Piven, of more current Entourage fame, as well as George Clinton and Parliament.  Rockin.). And some believe that labels polarize people, accentuate differences and not similarities, and contribute to a feeling of divisiveness in our society.

Well, hopefully the 90s era of policitizing labels has passed, as we all have become more aware of the importance of respecting others as individuals, with their right to self-identify as they choose.  But, as in other areas, attitudes towards those with disabilities have lagged.  Three examples for you.

The Eggshell Child, or, "Are you Disabled Enough?"

As I explained earlier in Cloud Computing and Disabilities, disabilities are part of the spectrum of being human.  As the medical understanding of disability as changed, federal regulations have evolved to reflect this understanding as well. In fact, the IDEA 2004 recognizes that "Disability is a natural part of the human experience and in no way diminishes the right of individuals to participate in or contribute to society.  Improving educational results for children with disabilities is an essential element of our national policy ofensuring equality of opportunity, full participation, independent living, and economic self-sufficiency for individuals with disabilities." 

The problem - and it's built into the same IDEA regulations -  is that special ed services are available only to those kids who fit into one of about a dozen boxes (e.g., specific learning disability, visual impairment, other health impairment, etc.)  On top of that, many school districts require there to be a significant discrepancy between the child's intelligence and academic performance to even offer the child services.  In some cases, this might mean that your child needs to be 2 standard deviations away from the norm on an assessment test. It's not enough to say that your child is struggling with reading; your child needs to be struggling with reading AND is performing at, say, the 16th percentile.

Cloud Computing and Disabilities, Part Two

As promised (threatened?!), here are the next few thoughts on the Coleman Institute/Silicon Flatirons conference I attended last fall.  Today I'll cover some of the perspectives offered by Michael Wehmeyer, a professor of special education at Kansas University, about cognitive accessibility.

Prof. Wehmeyer provided a brief history of the concept of "disability".  Originally, disability was understood as a medical/health problem - a problem within the individual person.  That person is viewed as "broken" or aberrant, as outside the norm and therefore requiring intervention.  This model casts a negative light on people with disabilities and in fact contributed to the infantilization of people with cognitive disabilities ("You are not "smart" like me; there is something wrong with you; I am going to tell you how you're going to live your life").